Still on that boat…

Strawberry blonde in a dizzy world!
Browsing Uncategorized

Off to see the wizard the wonderful wizard of Washington DC!


Yes not that catchy really, can’t see that taking off!

It was hard going trip. On the positive on the way out the plane had hardly any people on it so we were spoilt by the cabin crew. On the negative I got a migraine. On the positive we got through security and out of the airport in record time. On the negative the hotel we had only chosen because it had a bar and a pool – well both were closed. On the positive there was a health food shop opposite with a bar in it – only in America!

The clinic seemed to think I was doing well (hard to comprehend when you’ve been in bed/on sofa for six months, just had a migraine and had been in a wheelchair the day before) so they are reducing my protocol and hopefully my own immune system will kick in and take up the slack. They seemed pretty positive so I guess I have to go along with their plan and trust in their wealth of experience. My GP and I both think I’m deteriorating (I am – that’s a fact) and that my body is not coping with the drugs so he wanted less drugs to be taken too. So on the one hand I’m reducing drugs because I’m getting better versus the other hand where I’m reducing the drugs as I’m getting worse and need a break if that makes sense? I really hope that the clinic is right and prove my GP and I wrong.

I have been told to be more glass half full about this but anyone who has followed my blog for any length of time will know I’ve been at this kind of point hundreds (mini exaggeration) of times before and each time I get let down it’s taking me longer and longer to pick myself up again. I certainly need more brains (what’s left of mine needs an upgrade!), more courage to continue on with this never ending battle, more heart to stop the jealousy and ‘why me?’ that I just can’t shake off and that my doctor isn’t just a ventriloquist – it’s ok he never brings in a puppet!

I started the new reduced protocol (looks like it – practically needed a suitcase to take away my drugs from the pharmacy!) yesterday so please God let them be right – I really badly want to believe them.

So at the end of the consultation I wish I could have just tapped my heals together and been in my own bed. There is no place like home, there is no place like home – especially when you feel rubbish 🙂



This is a lovely poem by Australian Lyme Patient Karen Smith. I came across it (I think I was Googling ‘Can Coconut Oil Cure Lyme?’ or something else equally as daft) and felt I should share it to help spread awareness. This lady has done just that for people in Australia where the diagnosis and treatment of Lyme is even more of a battle than it is in the UK. It is very simple but brought a tear to my eye:



Invisible is really not all it’s cracked up to be
It is dark and painful, lonely and bleak
It is the realisation that you must constantly fight
If there is any chance to be reunited with the light


Invisible is the desire
To live without pain and to return to a normal life
To be able to work, drive, listen to music or dance
Where the simple act of catching up with friends
Doesn’t come with the ‘pay back’ of a few days in bed
It is the dreams to participate once again in life, to live to the fullest, not simply exist


Invisible is the longing
For the understanding of family and friends
To know that they truly remember who we were before illness
That they believe that we are doing our very best to return to that life
To know that we are still loved and respected for the people we have always been
And not judged by the illness that has consumed our body


Invisible is the despair
That one day you will not keep finding a reason, or the strength to continue on
It is the midnight tears and the questioning of ‘who am I now?’
It is wondering will this pain ever end, will these voices ever cease
And will I ever find ‘ME’ again


Invisible is the cloak we wear
The smile on our face and our light hearted jokes
Are veils and armour that hide the pain and heartache
Look into our eyes and you will see
Invisible is a place you don’t ever want to be


Help us bring invisible into the light
So that no others have to suffer and fight
Tell our stories, believe our plight
Stand up with us and say, enough of the suffering this just isn’t right




Being chronically ill with an illness that nobody seems to have a clue about is awful. Being treated like a guinea pig, taking tablets that make you sicker and sicker each time. This treatment being your ONLY chance to have any type of life and that’s only if it even works is pretty stressful. Then you have to make the crucial decision each day. Bed or sofa? Bed or sofa? Bed of sofa? They advise you to avoid stress too – how crazy!

Hazardous shopping


Well today I managed a trip out to Dunelms whoop whoop! It was a risky choice with my current penchant for spontaneous Greek nights and having previously passed out (didn’t break my plates that time!) there a couple of years ago. I did consider going to a different branch but instead went for the ‘wear a hat and keep your head down’ approach (no fake moustache). So I managed it with a few wobbles and got home feeling pretty awful but now proud that I’m saving the environment from my excess paper plate usage – just kidding!

I’m upright. Small steps 🙂

Another wonderful New Year ahead I’m sure ;-)


Going to bed with a cup of tea at 11pm on New Years Eve and then waking up with a migraine is a great way to see the new year in. Hey, should I have expected anything else the way that things are going?

My life is like groundhog day (got to love Bill Murray!). The only variations are bed or sofa? bed or sofa?

Things have been shit shit shit apologies for my language but I can assure you I’ve been using far stronger. Even had a little plate therapy due to my frustrations. It was really good, I may be on to something. I’m well past colouring therapy that’s for sure!

But on reflection I have achieved some things so it’s not all bad. I made this cake for my mums 60th birthday. She is known in the village as the ‘old lady on the bike’. Fortunately she finds it funny! I’d like to say it was just one of those things that I just ‘whipped up’ but a lot of hours and YouTube videos were used in the process!

I also did some ‘photo bunting’ and decorated the house with it. So many people got involved sending me pictures that we managed to decorate the entire house.

Everyone had to send a photo and a funny comment:

It was very sad going through all the photos  – my life was so full of potential and its all been wasted. My poor mother is still having to hold me up!

It’s been very tough and I would have lost my mind if I didn’t have support from certain people – you know who you are!

Just some advice for those of you that have friends with a chronic illness. It is so hard to make contact with people when you feel ill. You feel like you don’t want to call up and bug people when they are busy with their own busy lives. That you have nothing to say as there is nothing going on in your life except illness and you don’t want to be ‘that person’ who just complains. Phone them (they can always ignore it if they feel to too ill) or send a quick message (I don’t mean me). My friends do this and it means the world when you’re stuck in all day on your own. So go on, do it now 🙂

Adult tantrum alert



I don’t want to play anymore it’s not fair 🙁

Open wide


The muscle tension in my jaw has caused my jaw to keep locking and this has meant that I have been eating and drinking through a straw at times. Laughing is not good (not too much worry about that at the mo!). I have had to cancel my dental appointment reason being ‘I can’t open my mouth’ – the fun continues!

No chewy NKD bars for me for the time being 😉

I did have a nice trip to Spain (airBnB is awesome!) but I’ll write about that when I’m not feeling really ill as I managed well there 🙂

All very well but…



…if someone says that to me right now I will punch them in the face and tell them ‘oops sorry I made that mistake but I’m only human and now at least you feel feel alive – hope you feel better soon’ 🙁


(Image stolen from a fellow Lymie who is trying to be supportive to everyone suffering and I’ve just been a miserable so and so!)

Are you having a laugh?


I’ve had the headache from hell for over three weeks now and it is awful. I went to my local surgery to have some ‘safety’ bloods done – yeah that fills you with confidence right? Anyway, I looked so awful that the nurse said I needed to see a Doctor. I explained that I really didn’t think that there would be much that they could do but she insisted and I was right, nothing could be done to help. I’m already on maximum doses of the medications they would put you on for my cervicogenic headache – yeah worked out what it is between two doctors and Google. I then went to the receptionist to book in for my next blood test and she then said I should see one of the doctors as I looked so awful. It’s like busses, you can never get an appointment and then offered two in one day! It was really good that they were trying to help though 🙂

So I’m basically stuck with this headache that isn’t just a headache it’s like the mother of all hangovers. I couldn’t even stand long enough to heat up some food in the microwave the other day as it gets worse the more I stand or move. So I can hardly move my head but on a treatment that makes me sick – hmmmmm life not playing fair at all!


Hands up if you wanna vomit but…


…the drugs that you have just taken are too important and expensive to do so!



« Older EntriesNewer Entries »

Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉